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'I just started thinking where are the people?': Jacksonville heart walk looks to bring together adults with congenital heart disease

1/100 babies are born with a heart defect and now millions are living to adulthood. The Adult Congenital Heart Association is hosting a heart walk in Jacksonville.
Credit: Adult Congenital Heart Association

JACKSONVILLE, Fla. — It’s the most common birth defect, but many people with it say they don’t know anyone else with Congenital Heart Disease. CHD is when a child is born with a heart defect. There are many different kinds. 

Millions of patients are now living to adulthood. 

This time next week is your chance to meet the community in Jacksonville.

The Adult Congenital Heart Association is having a heart walk at Ed Austin Regional Park on Sunday, April 30. Check in is at 9 a.m. 

You can learn more about the Jacksonville walk here.

Medical Director of Adult Congenital Cardiology and Pediatric Cardiology at Wolfson Children’s Dr. Brandon Kuebler says access to care is a hurdle the industry is working on improving as there are now more than 2 million adults in the U.S. with congenital heart disease.

Having walks like what’s coming up on April 30th is an opportunity to bring people together, raise some money, increase awareness so folks can know about opportunities to connect with people living with congenital heart disease and also some of the teams and resources in the region that provide that care,"  Kuebler said. 

Melissa Hartman was born with a Tetralogy of Fallot, a heart defect with multiple facets. She had her first open heart surgery at 4 years old and says she went many years without seeing a specialist. 

This is a common issue among CHD patients. She says her parents thought her heart was fixed, but CHD is a lifelong disease and follow up care is necessary.

Hartman says she eventually needed another open heart surgery in 2011 and began looking for a community.

"I just started thinking where are the people? Right?," said Hartman. I know they’re out here so that called me to the Adult Congenital Heart Association. To find people and help others find people!”

CHD affects 1 in every 100 babies. Hartman was one of the first patients to bring the walk to Jacksonville years ago. 

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